Jayah Masters is in pain, every single day. Treatment helps with some things, hinders in others. To provide a non-invasive, natural way to get her through each day, her mum Renee turned to Satan’s Little Helper.
The thing about life changing events is that, to qualify as one, it needs to fundamentally shift the ground beneath your feet forever.
Jayah Masters was 12 when she had hers.
“Jayah was a high-achieving kid at school before she became unwell during her last year of intermediate,” explains her mum Renee. “She was unwell for around 18 months, but things really accelerated when she lost her range of movement, after her joints ballooned in size.
“We took her to the emergency department and she was eventually diagnosed with Systemic Juvenile Idiopathic Arthritis, which is very rare.”
A few years in Hell
Jayah has since had several hospital stays, painful steroid injections into her joints and intensive rehab work. There is no cure for autoimmune conditions, so she’s also had to battle flair ups that leave her wheelchair-bound, because her joints are so cripplingly painful.
The treatment also comes with side effects. Jayah, now 15, has had to deal with chronic fatigue and rapid weight loss, as well as the brain fog caused by her pain medication, which meant keeping up with her schoolwork was off the table.
Jayah explains: “When I was on my meds, I found it really hard to concentrate and I could not get up in the morning. I’d sleep until mid-day, but now I’ve come off them I can wake up in the morning and interact with my family!”
“She wanted to be head girl of her intermediate school,” adds Renee, “but we couldn’t get on top of things and then last year she got lockjaw and became septic. Her fatigue got so bad, she couldn’t maintain a whole day at school.”
She’s also been forced away from sport and needs to use a walking frame or wheelchair to get around.
“She finds it really hard, because everyone stares at her,” says Renee.
Learning how to deal with it
She has since been taken off the opioids that were putting her in a “drug induced haze. Her life is one of pain management.
"I’ve realised that I can’t do the physical things that I used to enjoy,” adds Jayah, “so my main focus is on becoming smarter.”
Her pain will never go away and all she can do is keep up routines that mitigate it, reduces the chance of flair ups and help her do the things that matter to her. One of those is school – Jayah wants to be a doctor – another is kapa haka. She’s extremely social and well-loved among the Ngati Whakaue community in Rotorua.
Smart pain management
To help her manage her pain and provide a way for her to be social without the complications that leaving the house entail, Satan’s Little Helper got Jayah a spa pool.
“The pool is super helpful for pain management and makes her more comfortable on a daily basis,” explains Renee. “I don’t even need to be in there for too long before it helps,” adds Jayah. “It helps me sleep better at night, it’s good for me mentally and I’m actually able to wake up and interact with people in the morning.”
Socially, the pool has been a boost.
“Her and her sisters are really close and being able to use it for socialising with her has been massive for them. It lets them all hang out without worrying about Jayah’s mobility.”
When she was first diagnosed, Jayah would push herself to do the things she used to but then crash and burn when her body fought back. Now she’s better at managing herself and equipped with a spa, she’s got another tool to help her lead a more comfortable life.
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